Disclaimer

None of the advice I give is a substitute for evaluation and treatment by a licensed and certified speech-language pathologist. Any ideas taken from this blog should be discussed with your child’s treating therapist to ensure proper use.

Views expressed are my own and do not necessarily reflect those of my employer.

Originally published on 2/14/2011. Update includes new photo of my beautiful sister, April. **

Sisters hanging out. Jennifer and April (26)

This year we received a LOT of Valentines. I don’t remember getting this many before. Last week my husband Pete was out of town presenting at a conference. He returned home last night, took one look at our mantel filled to the edges with cards and asked, “Who are all of these from?” Well – grandparents mostly, and my sister. I handed him April’s card, “Read this. It’s from my sister.” A smile emerged across his face.

April and I have a very competitive (loving, and sisterly) relationship. Inside the card was a hand-written note encouraging me to eat Valentine’s Day candy. Why? Because I will gain weight, lose our ongoing weight-loss challenge, and she will forever reign supreme as the “Biggest Loser.”

April’s sense of humor is expressed perfectly in the card she picked out, purchased, addressed, and mailed herself. It’s one of the funniest cards she has ever sent to me. (Click on the pictures to enlarge and read)

Language is so much more than vocabulary. It is more than following directions. It’s telling jokes, knowing when your older brother is being a jerk and not paying you a compliment, and figuring out how to irk your sister in just a few sentences.

So how in the world did April go from a little girl with Down syndrome in speech therapy to young woman using a card to push her sister’s buttons? How did she learn these kinds of language skills?

If your child finds something funny, talk about it. Explain what you find humorous. A great time to do this is during TV commercials. This provides a model and framework for their answers later when you ask, “What’s so funny?” And most importantly – remember to laugh at their knock-knock jokes. Somehow life feels a little less complicated when we can laugh together.

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When Down syndrome (DS) makes my Facebook trending sidebar, I click the link. By now you’ve likely seen the article on Sam Forrest heroically taking his son when his wife allegedly abandoned him. And the internet exploded with outrage followed by the desire to “do something to help.” As of this morning Forrest’s Go Fund Me account has raised over 475K. Please let that sit for a moment. Complete strangers who heard the initial story of Forrest’s desire to move his child to his native New Zealand following resulted in nearly half a million dollars in funding in 12 days.

Screen shot: 9:14 AM EST 2/8/15

Seriously. Red flags were everywhere before Forrest’s wife and baby Leo’s mother, Ruzan Badalyan, went public with her side:

– “Forced to choose” wife over child resulting in divorce. Within a week of the child’s birth.

This story did not occur in the United States and it is an unfortunate reality that many parents in Eastern Europe choose to place their children with disabilities in orphanages. Baby’s Leo’s mother Ruzan Badalyan spoke out several days later: “As a mother who has faced this severe situation, being in the hospital under stress and depression, experiencing enormous pressure from every side, not finding any support from my husband’s part on any possibilities of giving a child decent life in Armenia, I faced two options: to take care of the child on my own in Armenia, or to abandon my maternal instincts and extend the baby an opportunity to enjoy a decent life with his father in New Zealand. I went for the second option.”

Badalyan further explains the family’s financial situation: “I understood that in Armenia, where is no extensive social infrastructure to help children with developmental disabilities, no governmental support, with the continuous hard economic situation in the country, with the possibility of renewed war with our hostile neighbour–with whom the fragile cease-fire seems to be deteriorating over time–always looming in the background, with my salary of 180$ being partly supported by my sister and living in my mother’s place and having no other income, as my husband did not work, I would not be able to raise my child with special needs (emphasis mine)”

So, let’s get this right. Before the baby was born the mother was working, the father was not, and they were living with family to support them. Red flags people! I question Forrest’s outspoken desire to work part-time in order to care for his child. Who wouldn’t want to work part-time to raise their child? This sentiment expressed by the father further reinforces the narrative that children with Down syndrome require more parental time and attention than other children. Yes, many times children with DS require more medical support especially in the first year of life, but this does not necessitate part-time employment. What occurred here was a baby was born in country with nonexistent infrastructure to care for child with a disability. The diagnosis delivered in a way consistent with the country’s view of disability.

Instead of being outraged and focusing our monetary giving on this one individual, the Down syndrome community and others interested in supporting children with disabilities could instead*:

– Support organizations who work on developing adoption plans for families who make this choice

– Volunteer with disability organizations like Best Buddies There are many ways to support the lives of those with Down syndrome and other disabilities other than an individual Go Fund Me plea. A story that grabs at your heart shouldn’t be simultaneously grabbing your wallet.

*Suggestions do not imply endorsement and are given as ideas to get you thinking about ways to give of your time or money.

They say that breaking up is hard to do. Now I know, I know that it’s true.

I’ve had a number of people ask me recently, “How do I know if it’s time to change therapists?”

This is a loaded question with lots to consider. I’m going to base the initial question of switching therapists on the assumption: There is someone your child can switch to.

The first thing I want you to know is,

It’s okayto change.

First, ask yourself some questions:

Is your desire to change because of your child’s lack of progress with your current therapist?

Does your child seem to work effectively with the therapist but the two of you don’t connect? Maybe reversed? You like the SLP, but your child does not work well with them?

Does your therapist tell you, “I don’t know what else to do.”

Lack of Progress

Reason #1. Your child consistently attends therapy and despite home carryover progress appears very slow or non-existent. Please talk to your SLP. At times it’s difficult to see the progress your child is making because you’re together every day. Ask about the goals the progress made toward them. Be up front about your concerns. I’ve had situations where I’ve been able to pull goals and say, “When we started Tommy could only say 5 words. Now he uses 20 words on his own!”

Conversely, a parent’s concern is sometimes a segue to a conversation about other potential diagnoses or how to change treatment strategies. The take-away here is: there should be progress. Hopefully a conversation will help alleviate some concerns.

Lack of Connection

Reason #2. You don’t connect with the SLP but your child does. Tough one. The fit for your child is important. BUT, if it significantly hinders you from being a part of the therapy plan – look elsewhere.

If your child doesn’t connect initially I recommend talking to the SLP and trying 2-3 more sessions. Children (and therapists) need time to establish rapport and build a relationship. Talk to the SLP about what’s worked for other children. Visual schedules, alternating work/play tasks, a timer…There’s a difference between acting out/shutting down because communication is difficult and a personality conflict.

If the therapist suggests you leave the session make sure there is someway to know what’s going on – observation via 2-way mirror or video. Avoid situations where you are asked to stay in the waiting room the entire time especially when your child is young. With due diligence on the part of yourself and the SLP, if a child still doesn’t connect it may be time to explore other provider options.

“I don’t know what else to do.”

Reason #3. “I don’t know what else to do,” masks a number of underlying sentiments from “I’m limited in my background and I’m truly at a loss” to “I’m tapped out (for various reasons) and you need a new therapist.” An SLP doesn’t have to be a specialist in DS but does need the desire and interest to learn about your child.

If your therapist has run out of ideas – and it’s happened to every SLP at one time or another – ask for a reference to another provider. For instance, I’m very aware that past a certain point I’m not a good fit for a child advancing with assistive technology. I will transfer care because I know another provider whose skills better match this need.

Don’t be afraid to ask questions. Go with your gut. Make the choice that works for you and your child, guilt free.

In 2008, my colleagues and I spoke the topic of visible vs invisible disorders and behavior management at the Society of Developmental and Behavioral Pediatrics Annual Conference. The situation Wallace highlights in her article could have easily been an illustration in our presentation. The instructors at the gymnastics studio were responding with bias to the way her son looks, not his ability.

Some diagnoses, like Down syndrome, come with visual signs or symptoms. These are things the general public may pick up on by looking at a person. Other diagnoses, like autism, dyslexia, or Tourette syndrome (TS), can’t be seen on a person’s face. My oldest son* has TS. Like the women in Wallace’s story, a few have responded to him based on their misconception of the diagnosis.

When we perceive our child has been slighted a wave of emotion pours over us – anger, sadness, righteous indignation. The Mama Bear in us rises up to protect, intimidate, and if necessary attack. Instead, these feelings should give us reason to pause. This is why I appreciate Wallace’s approach. Without aggressively pointing out personal ignorance, she tries to show how well her son fits in with the group. Sometimes people remain blind to their own prejudice and for the well-being of her children, Wallace removed them from the program. Thankfully, this isn’t always the result.

Several years ago my son started on a new soccer team and his tics were flaring up. I approached the coach on the first night of practice to let him know about the diagnosis of TS and what he might see during practice and games. The coach’s first question was, “Is he going to bother the other players?”

Like many other parents before me I wanted to react. Instead, I kept calm and smiled. I offered to speak with the team and other parents if his tics became disruptive. I assured him that my son loved soccer and would be doing his best to focus on the game. Believe me, my husband and friends got an earful.

While I thought some very negative things about the coach’s initial response, my son had a great year. I hope the experience paved the way for others in the league.

As a community we need to decide:

If our goals are acceptance and inclusive communities, what are effective ways of dealing with misconception?

Have you successfully engaged others about your child’s diagnosis? If so, please share!

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I am asked frequently, “When should my child start speech therapy?” This is a great question! Usually parents are asking, “Is my child old enough to improve how they sound when they talk?”

Many times infants or young children with Down syndrome (DS) will start language therapy at before speech therapy. There is a difference between the two types of therapy, although we commonly refer to visits with a speech-language pathologist as “speech therapy.”

Children with DS typically have delays acquiring speech sounds and words (Stoel Gammon, 2001). The process of gaining sounds in children with DS goes like this*:

Early infancy: cooing

Mid to late 1st year: babbling

18 months: average 1st word

36 months: combining words into phrases, using common phrases with multiple words like, “I did it!” or “1, 2, 3…go!”

Providing children with DS language-rich experiences during the early years of life will not only support learning, but also speech development. Activities that nurture communication include:

Reading books together. Don’t worry about reading every word on the page. Take time to look at the pictures with your

Attribution: Nationaal Archief/Willem van de Poll

child. Comment and let them show you what’s interesting to them.

Engaging in turn-taking games. Roll a ball back and forth. Play peek-a-boo. Alternate between peeking and allow your child to “peek” too.

Playing with toys that start/stop manually like rolling cars down a ramp or a jack-in-the box. This allows natural opportunity for you each to take turns as you play together.

Being silly together. Children pay attention when adults behave in ways that are unexpected. In my sessions I place toys on my head like a hat and then say, “Ah – ah – ah – Chooooooo!” sneezing them into my lap. It’s usually good for a laugh AND the child tries to imitate my actions and sounds.

Most children with DS are in preschool or kindergarten when goals for articulation are established. Until then, therapy focuses on the child’s ability to understand and use words and gestures to communicate.